Santabarbara says his son 'needs a voice in Albany'

The Enterprise — Michael Koff

High five: Assemblyman Angelo Santabarbara shares a high five with his son, Michael, at the family breakfast table on Tuesday. Michael is autistic, and uses signals like thumbs up and high fives to communicate. 

New York State, for the first time, has an Autism Action Plan that will be fleshed out as more laws are passed to support it.

The movement to provide support for people with autism after they’ve left school is being spearheaded by Assemblyman Angelo Santabarbara, whose 15-year-old son, Michael, was diagnosed with autism at the age of 3.

Every morning Santabarbara helps his son dress for school, sharing breakfast time, and hugging him before he gets on the school bus.

The assemblyman calls Michael his best friend.

“He doesn’t speak too much,” said Santabarbara, “But he does communicate.”

The pair uses gestures — like thumbs-up — to talk.

As his son, now a student at Wildwood, grows to adulthood, he’ll face new challenges, finding a place in the world.

“He needs a voice in Albany,” said Santabarbara.

A Democrat who lives in Rotterdam, and has a district that includes all of Montgomery County, the bulk of Schenectady County, and just the towns of Berne and Knox in Albany County, Santabarbara was just elected to a third term and is enthusiastic about his new bevy of bills on autism passing.

He hopes New York’s laws will serve as a model for other states.

 

The Enterprise — Michael Koff
A hug goodbye: Assemblyman Angelo Santabarbara says goodbye to his son, Michael, as he leaves on Tuesday for Wildwood, where he goes to school.

 

Autism Action Plan

Governor Andrew M. Cuomo signed into law one part of Assemblyman Angelo Santabarbara’s bill package aimed to make opportunities for housing, jobs, and education for autistic residents of the state.

Designated the Autism Action Plan, the first of the bills to be signed into law two weeks ago will create a board to advise the health department on setting up of a statewide Autism Spectrum Disorder Program. Members would be made up of state officials, professionals in the field of autism, and family or self-advocates from the autism community.

Autism spectrum disorder refers to a group of developmental disorders that include autism disorder and Asperger’s syndrome. This article will refer to ASD as autism.

Santabarbara told The Enterprise that this is a “central bill” “that allows the other bills to go through.” He introduced it to the assembly in 2016 and it was passed by both houses, something that Santabarbara describes as a very difficult feat.

By passing a bill to set up an advisory board, the four other bills Santabarbara sponsored could be overseen by this board, which may suggest other laws to help those with autism, he explained.

Once a year, the board will produce a report to state legislators on how to improve services for people with autism, said Santabarbara.

“I’m very happy to see that the bill passed with unanimous support,” he said.

The other bills are still in process. Bills that would reform vocational services and provide loans to those with autism are going before legislative committees on housing and education, said Santabarbara. A bill to create an identification card for those with autism has passed the state assembly but not the senate. A “technology bill of rights” to make websites more accessible to those with autism is still in committee.

This would be the state’s first “coordinated Autism Action Plan,” said Santabarbara, and he is confident the rest of the bills will pass because “the numbers are there,” since 1 percent of the world’s population is diagnosed with autism spectrum disorder.

The beginnings of a bill

Rebecca Botta-Zalucki, 33, is a graduate of the University at Albany and is a licensed master social worker for New York State, as well as a disability advocate. In the spring of 2014, she and a colleague approached Santabarbara with a draft for a proposed bill on improving the program Access VR, a vocational assistance program for those with disabilities. This is now one of the components of Santabarbara’s bill package.

The two colleagues suggested adding services such as special-education assistants or speech pathologists so that those with autism could improve their communication skills before entering the workforce.

“It’s not a problem that people can’t do work; a lot of them have average or above average IQs,” she said.

Struggles faced by people with autism, such as a lack of eye contact or social reciprocity, could be improved before entering the workforce.

“I think it would be counterintuitive to do this while in the workplace,” said Botta-Zalucki.

She later explained how workplace relations would be far easier to maintain if someone with autism came into a job knowing important social and communication skills.

For the last three years, the two colleagues have been communicating with the assemblyman’s office to provide information and suggestions they had obtained doing research on autism and social services.

Botta-Zalucki said Santabarbara had been planning to address autism services before they even approached him.

“He’s always been an advocate,” she said.

Transitioning to adulthood

According to Santabarbara, one in 68 children in the United States are diagnosed with autism.

“It makes autism the fastest-growing developmental disability in the country,” he said.

Santabarbara’s son attends Wildwood, a  not-for-profit private school for those with developmental disorders, which he describes as “an excellent educational model.”

“This should be available to more,” he said.

Wildwood creates a transition process for those leaving high school and becoming adults, akin to the proposed legislation that stresses programs for autistic adults.

Tom Schreck, who manages public relations for Wildwood, said that the legislation is “a wonderful opportunity.”

“It seeks to set up a framework for best practices all over the state,” he said.

According to Schreck, helping people who are autistic transition to adulthood involves supporting them in various aspects of their lives — recreational, vocational, and educational.

“Anything any other adult needs, a person with Autism Spectrum Disorder also needs,” he said.

Santabarbara also noted two organizations already helping adults with autism: Puzzles Bakery in Schenectady, which employs people with disabilities including autism, and the Mosaic Village in Cohoes, a newly opened housing community for adults with autism.

 

The Enterprise — Michael Koff
In the tent: Assemblyman Angelo Santabarbara and his son, Michael, sit in a tent in their house. Michael, who is autistic, is sensitive to light and prefers the dimmer light inside the blue tent.

 

A strength, not a deficit

Botta-Zalucki stresses the importance of including input from people with autism when creating legislation. She herself has autism, and used that experience when drafting legislation.

“How do you make it the most inclusive that it can be?” she asked. “I think a lot of previous legislation left out that component.”

Botta-Zalucki added that the perspective that autism is a strength and not a deficit is important to emphasize in legislation as well.

“A lot of bills have taken a kind of deficit view,” she said.

According to Botta-Zalucki, people with autism have a very good work ethic. They are often diligent employees who “go to work to work,” and pay attention to detail.

“I think it tends to be overlooked by employees,” she said. She feels employers need to learn more about and be aware of autism to understand its strengths.

Santabarbara noted that people with autism suffer from a low employment rate, often due to issues with communicating with employers. He said his office has heard from self-advocates who couldn’t get jobs for this very reason.

Housing bill

Santabarbara seeks to offer affordable housing for people on the spectrum or elderly people outside of apartment complexes. The bill would establish a program for interest-free loans of up to $50,000 or 50 percent of the costs of adding an addition of one or two bedrooms to a house of a family with a disabled member or a member over 62 years old.

“It is a creative way to provide an independent housing option,” said Santabarbara.

In the original bill, those in low-income families or multi-dwelling homes are left out, but Botta-Zalucki is looking to ensure that this bill encompasses those as well.

“Autism doesn’t discriminate,” she said.

“Technology Bill of Rights”

Another part of Santabarbara’s bill package is one that would redesign state websites to be more accessible for those on the spectrum. Web pages for the State Department of Health, the Office for People with Developmental Disabilities, and the Office of Mental Health would offer menus with a variety of formats, such as charts and graphs for visual learners, dynamic flowcharts for visual thinkers, and spoken messages for auditory learners.

“For individuals with autism, when you have a lot of sensory input, it can be very confusing,” said Botta-Zalucki. “And also for individuals with other disabilities,” she added.

A new ID card

Another bill would create an identity card for those with autism. The commissioner of mental health would develop the card, which would include information about the possessors’ disability so it could presented to emergency responders when necessary.

The card would include the bearer’s name, date of birth, address, and the statement: “I have an autism spectrum disorder, I may have difficulty understanding and following your directions or may become unable to respond. I may become physically agitated if you prompt me verbally or touch me or move too close to me. Autism is not an excuse for illegal behavior. I am not intentionally refusing to cooperate. I may need your assistance. Please see the back of the card.”

The back may include emergency contact information or other additional information.

The original idea for the ID card, said Botta-Zalucki, would include this warning for first responders. Other factors are being considered. One is to provide a form of ID to people of all ages, and perhaps create a bracelet or necklace. There was also a question of protecting the owner from identity theft if the card were lost, and so the idea has been brought up of having a QR code for first responders to scan.

Hope for the future

Once the advisory board is set up, Botta-Zalucki said she would be open to being on it, as long as it does not conflict with her job at the state. She said it will be the board’s job to keep tabs on and make recommendations about services to people with autism.

“A lot of these services have been made without taking the opinion of those with autism,” she said.

The senate and assembly will appoint board members, said Santabarbara. He also would be open to being on it, so long as he can use it to further help those with autism.

Botta-Zalucki says services need to improve for adults with autism.

“It doesn’t just disappear when the child turns 18,” she said. Yet, “a lot of these services appear to evaporate.”

She added she would like to see some kind of transition of services between high school and adulthood.

Botta-Zalucki hopes that awareness can be raised about autism being a strength, and that those children diagnosed with autism who soon will be adults will have better services.

“New York State can be one of the states to really be autism-friendly,” she said.

“Other states will be looking to us as a model,” said Santabarbara.

More Regional News

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  • “We enter Thanksgiving week and yes, as Americans, we are thankful. We’re thankful to live in this great country and to live in this state. But with that gratitude comes a sense of responsibility to others….,” said Governor Kathy Hochul as she signed a bill on Saturday making the Nourish New York program permanent. “This war against poverty is going to continue until no child goes to bed in the State of New York with a hungry stomach, never again in our state.”

  • Figures from a year ago — Oct. 24 to Nov. 24 — before the first vaccine was authorized, show better numbers in Albany County than the same time period this year. There are 1,000 more infections and two times the number of deaths, year over year.

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